Fear is the great inhibitor. Christopher Reeve, in one of his last speeches, titled “Living Without Fear,” wrote: “For so many of us, the source of our fear is the loss of control.” How true that is, especially for those of us with spinal cord injuries and paralysis.
We may never live perfectly fearless lives, but we must discover how to leave fear behind at important times and take action if we are to make progress, even if we are uncertain (without taking foolish risks). Truthfully, in my life as a paralyzed wheelchair user, I have not always been able to leave fear behind when attempting something new or when faced with an unfamiliar challenge. Fear is persistent. It will always show up in certain situations, especially when we are experiencing health problems.
Consider what happens when people experience chest pain. We convince ourselves that it is just a passing thing, possibly heartburn, nothing unusual. But too often the real problem is angina, the pain caused by insufficient oxygen reaching the heart muscle due to narrowed or blocked arteries, known as cardiovascular disease (CVD) or coronary artery disease (CAD). Now that those of us with SCI are living longer, heart disease is a leading cause of death. A 2013 Canadian study found that the chance of individuals with SCI having heart disease is four times greater than in the non-SCI population.
While the causes and risk factors of heart disease are well known, the impact of fear upon those risk factors is rarely discussed. I know the importance of this well. As early as my mid-30s I was told my blood pressure was high for my age, but I ignored it. I had been paralyzed for 15 years and felt no discomfort and thought of myself as healthy, even though I had a family history of heart disease. When I reached the age of 50, I finally started taking blood pressure medication. Why didn’t I take it seriously before then? I knew I could have heart disease, and I was afraid to face it.
At the age of 60, I started having strange pain in one arm but dismissed it, despite having read that arm pain could be a sign of an impending heart attack. Finally, in December of that year, while pushing my manual chair up a steep hill, I began to feel pain in my chest. When I reached the top of the hill, I began to sweat and feel weak and woozy. I went inside a cool room and sat there for a half-hour, just trying to relax and breathe. In time I felt OK. I didn’t mention it to anyone. Fear had me in its grip, forcing me to deny that I needed help.
The next night I began to feel that same pain in my chest while transferring into my car following a Christmas party. But then it passed. I wondered if I should go see a doctor. That night I awoke in bed and sat upright. The pain was worse, and I had exerted no energy at all. I got out of bed and took my blood pressure. It was higher than I had ever seen it, alarmingly high. My wife insisted that she drive me to the hospital emergency department.
Even with all the signs, when we were about halfway to the hospital and the pain subsided, I told her I felt OK and just wanted to go home. Luckily for me, she refused.
The doctor ordered an immediate angiogram, which showed significant narrowing in all main coronary arteries. One was 95% blocked. The damage to all arteries was too severe to implant stents. A heart surgeon told me I could go home or have quintuple coronary bypass open heart surgery the next day, but if I chose not to have the operation, my chances of dying of a heart attack sometime in the next year were about 50-50. The decision was easy. I knew I could no longer deny the very problem I had feared for decades.
The good news is once I faced, or more accurately, was forced to confront my reality, I had the operation, gave my all in the recovery process, which lasted several months. Over the next three years, I had to have two stents implanted, a relatively easy and painless process. But it has been smooth sailing, heart-wise, since then. Still, though, new fears keep popping up, most of them health-related. As we age, the likelihood of medical issues becomes more real, and complications from SCI are at the front of the list.
How many times have you been faced with a new challenge or health complication that gives rise to persistent fear? Are you fearful of driving? Uncertain if you should seek help for that small pressure sore that keeps coming back? Wondering if something can be done to help with too-frequent UTI’s or bleeding when you have a bowel movement? Getting short of breath? Feet and legs swelling more and more? Pain getting worse? These are all indicators that it is time to do something.
Since I had my bypass operation in December, 2005, I have been confronted with several medical situations that are not heart-related. In each case, I decided to face my fear and consult first with doctors. It has not been easy. I had a below-the-knee amputation, two peripheral artery implants, a difficult flap surgery that kept me in bed for six months, a colostomy, frequent infections requiring treatment, and a suprapubic catheter placement. Throughout all this over the past 16 years, I have been able to keep working and enjoy life. I have been fortunate to have good medical care and support from my wife and family.
I have learned that giving in to fear only prolongs what may at first seem like an unimportant complication, and when it does, things only get worse. Better to face the problem head on, take action, and maintain your quality of life.
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